Dx Update RCMD

[LynnI]

Well it appears I am not RA but RCMD (all 3 lines) combined with the MPD, 2 % Blasts, 95% Cellularity, Grade 3 Fibrosis, no chromosome changes.

The Valproic Acid continues to work, thank goodness and I have been tx independant now for almost 17 months and counting. Although this second round of treatment with the VPA, isn't jacking my hemoglobin up as high as it did the last time. It is stable in the high 120's, which I know most would love to have, so I am not complaining. My other counts have been holding strong with my Plt's being a bit high.

My Spleen continues to fuss at me and be slightly enlarged, but I am careful to protect it especially when riding or working around the horses.

Cheers,
Lynn

[Dick S]

Lynn, you have the same identical disease as I have, RCMD. Mine is <4% blast and I too have no chromesome damage. My numbers are borderline on getting TX and Vidaza soon, I hope. It's been a long three year wait and watch.

[Birgitta-A]

Hi Lynn,
How wonderful that you still have such a good result with Valproic acid ! Good that you can ride and work around the horses.
Kind regards
Birgitta-A

[LynnI]

Hi Dick and Birgitta-A,

Dick, apparently the RCMD has been my Dx all along, not the RA. I am not sure what is better, a wait and watch or treatment. Hopefully it will be a while before I find out, except for the VPA meds.

Birgitta-A, yes it appears that I am one of the lucky ones, that has an unexpected and brillant response to what is a minor treatment for low hemoglobins.

My horses and my dogs are so peaceful for me, whether it be riding or working in the barn or cuddling with the jrts or blasting (pardon the pun) around an agility course with them at full speed

[Chirley]

Hi, I know that I too am one of the lucky ones and I should be grateful but at the moment I'm so tired of the constant transfusions that I have been begging to start some treatment.

The answer has been a resounding NO. My doctor says that the treatment would be Vidaza but that I would also require increased transfusion frequency for the first few cycles as well. He said that my WCC would also be a probelem and that it's best to put off treatment as long as possible.

I fainted at work a couple of weeks ago because I postponed my appointment for a transfusion and the Hb dropped to 60. It might not have been a problem but the temperature was over 33 degrees as well. I have learnt that I can't put off my transfusions.

I have developed an itch that verges on extreme. I can't take Phenergan because I have to drive and work and Telfast and Claratyne don't help at all. I often have entire nights when I don't get any sleep. I think the itch must be due to the transfusions because I have developed antibodies. I'm also so tired that it requires immense effort just to do the most basic housework. I have started ordering in frozen meals for dinner because I have been so tired that I started just eating whatever junk was in the pantry rather than cooking a healthy meal.

I know I sound like I'm whinging and I apologise. I know there are a lot of others worse off than me but I am just so really tired of it all.

Chirley

[Birgitta-A]

Hi Chirley,
You are right about low HGB - 60 is really very low and of cause you are tired.

Itching is a dreaded symptom for many patients with hematological diseases but I don't think you can get it from antibodies - I have so much antibodies after 104 units of packed red blood cells that it takes many hours to find blood for me (I have to leave blood for testing the day before tx) and I don't have itching.

Itching can be a symptom of iron deficiency. Perhaps you have already tried all advices from the special sites about itching like creating a cooler environment, such as wearing light clothing and keeping cool in bed, avoiding use of vasodilators (caffeine, alcohol, spices, hot water) and excessive sweating.
http://www.patient.co.uk/doctor/Itching.htm
Kind regards
Birgitta-A

[Chirley]

Thanks for that Birgitta.

I also have to have my cross match done at least 24 hours before the transfusion so they can find suitable blood.

I just assumed my itching was due to the transfusions. I'm starting to become desperate to find a cure for the itch. I've only managed to get one and a half hours sleep in the last three days because the itch prevents sleep.

I am having my next transfusion on Tuesday and I'm going to ask my haematologist about it. In fact, I am so distressed that I'm going to insist that he investigates the cause and prescribes a treatment. I'm not normally a demanding patient but this is becoming beyond my endurance.

If I had pain I could take pain relievers or apply heat packs etc but this itch doesn't improve now matter what I try. I have tried cold showers, sleeping naked with the air conditioner on cold, skin oils, anti histamines, moisturisers etc etc. I have stopped drinking tea, coffee and alcohol. I have been to a dietition and altered my diet to eating more raw and organic foods, fruits, nuts, vegetables etc.

I didn't get any sleep last night at all. Not one minute. However, tomorrow is my day off work and I can take a Phenergan tonight and not worry about being drowsy tomorrow. It doesn't take the itch away but it makes me so sleepy that I can doze on and off despite the itch.

Enough of me complaining. I had better go and make some dinner.

Bye for now.

Chirley

[Birgitta-A]

Hi Chirley,
Since my dx was Myelofibrosis I belong to 3 support groups for patients with Myeloproliferative diseases. Patients with one of these diseases (Polycytemia) often have terrible itching (like you). They use Atarax (Hydroxyzine) instead of Phenergan.
http://www.lookfordiagnosis.com/mesh...oxyzine&lang=1
Kind regards
Birgitta-A

[Lbrown]

Hey - another riding and agility fan here. Riding right now is keeping me sane. I just go and do what I can, if that is just sitting on the horse then that's what I do.

I asked the hematologist about valproic acid but she said she didn't think it would work for me. I don't have MDS so maybe that's why. So I'm getting transfusions about every 2 weeks.